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As some of you may recall my husband John was dx with WG in the Spring of 2011. He had a very long and bumpy road however was extremly blessed to have Dr. Ronald Faulk as his overseeing doctor at UNC...

So, today John had an appointment with his cardiologist at UNC. Johns heart is pumping at 30% (Normal is 60%). Last summer during his flare it was at 40% but had gotten back to 55% before he got...

DryHill - my children do NOT need encouragement of any kind Ha Ha!

Sangye - Being terrified of John getting sick lit the fire underneath us for John and the kids to have the flu shot. When Kimmy...

Sangye, I have learned to throw out the whole "Chemo" word when we go in. For some reason that really starts a fire under their feet to get him seen ASAP (at the local ER). At UNC (since they have...

My husband had both the pneumonia and flu shot this season. He was given the pneumonia shot while he was in the hospital back in late summer. The kids and I were told that we "had" to have the shot...

Al, I totally agree! The NoraVirus has been horrible here, I have known healthy adults that have been to the ER from it. That being set to the side, John is not healthy. Last week we were at UNC for...

Thanks everyone. Drz, I'm not sure the amount of heart damage that was associated with the heart attack. They considered doing another heart cath but due to the infection felt that they needed to...

Where do I even begin? After testing ANCA negative for 3 months in a row (Yes we do realize that the test alone DOES NOT constitute a "Remission" status) along with no symptoms and increased strength...

Thanks Sangye! Like I noted, I was not even going to pretend that I knew what they were talking about because honestly I didn't understand it all.

Ya know Al - I think we all have questions on how doctors do things, and I don't say this for a debate, but for sincere wonder of it all. When John went in the hospital at the end of July he was at...

So, John and I made our way to Chapel Hill on Thursday night so that we could be at the transplant center (where they do the RTX treatments) at 8am SHARP!
His past 2 infusions of RTX were done...

I love replies that make me feel more at ease, thanks Al.

I guess it just feels like another blow hearing "he needs another round of RTX". Keep in mind this was his first flare and it kinda...

Sangye, that definitley makes me feel better to know that it is "normal" for a WG patient to have more infusions in remission.

Phil, I'm curious about that as well. Funny how you realize the...

In July he had his first treatment, August was his second. He had 2 treatments of Cytoxan to start off with in June (as well as oral Cytoxan for 3 months). He had 7 Plasma Exchanges in August.
His...

So, the week of Christmas we had incredible news from Johns visit. Remission was the word given. Then today I get a call from his doctor (I guess they had other tests out still) and were informed...

In the beginning John was told to stay off of any motrin related meds and asprin. Tylenol only. After his heart cath showed an aneurysm and a blockage they spoke with the cardiologist and agreed that...

This post simply broke my heart. I'm so sorry for your loss. You will definitley be in my prayers.

YAY! Congrats to you.

Oh and they also have him taking a low dose of a baby asprin daily.

John is on Metoporal and another BP medicine. His BP was CRAZY. 180/130ish. He is now off of all meds except the BP meds and his average is 120/70. Seems like once he was off of the Prednisone it...

Totally off the topic.. But on MSN.COM the other day (it has the news headlines when I log in at work) it said that there is an increase of death for neti pot users?!? Anyone else see that? I mean...

Al - Do you tend to notice the colder weather bothers it? Johns doctor says that it shouldn't but John says it seems to be more sore when it is colder outside. He has also been dx with Raynauds which...

I actually called UNC and spoke with the neuphrologist. I am so glad I did. My main question was what John could take for the cough and congestion/running nose. I was informed that he is NOT to take...

I haven't read all of the replies so I apologize if I am repeating anything.

John has had partial numbness to his feet as well as both hands. In the beginning he was told it was due to meds (by...

So, John has come down with what we hope is just a cold. Stuffy nose, sore throat and cough. I had the horrible mess a week ago. His Nephrologist put him on Z-Pack to try to prevent infection. He was...